Learning About PSC
If you or a loved one is newly diagnosed with primary sclerosing cholangitis (PSC), you’re not alone, and you’ve come to the right place. At PSC Partners, we’re together in the fight, whatever it takes.
PSC is a rare disease that is often misdiagnosed. It can take a long time to receive the correct diagnosis, but, thanks to an increase in knowledge about this rare disease, that is changing. As you likely know, in the beginning, PSC symptoms can be minor or completely absent. Oftentimes, a blood test indicating a liver enzyme issue is the first sign that something is wrong. Now that you have been diagnosed with this disease, you want information and answers. We understand, and that’s a great place to start.
Thousands of people with PSC live active and full lives. There are proactive steps you can take to prepare for your future. Join a support group, attend the PSC Partners annual conference, join the PSC Partners social media groups, and more.
Follow these links to learn more about primary sclerosing cholangitis (PSC), and read the advice below from other people whose lives are impacted by PSC.
Advice from PSC Patients to the Newly Diagnosed
Keep it in Perspective
“You’re more likely to die with PSC than from PSC.”
- Remember, there are people who have had PSC for decades and are still doing well.
- Although PSC can be a life-threatening disease, one of the world’s foremost PSC researchers has frequently stated, “You’re more likely to die with PSC than from PSC.”
- PSC doesn’t mean you will drop dead tomorrow. It doesn’t mean that you only have ten years to live.
- (Your diagnosis) doesn’t mean that you will immediately turn yellow and start resembling your favorite Chiquita banana.
Advocate for Yourself
“You are in command.”
- You are the patient. You are the doctor’s customer. You are in command.
- Ask questions. Don’t be afraid to request clarification about your concerns.
- Many PSCers have a hospital buddy who comes with us to appointments and the ER. That person is a second set of eyes, ears, and an extra mouth for asking questions. When your head is spinning, your advocate can take the lead.
- Many doctors and medical staff have never heard of PSC and have no idea how to treat it, but knowledge is power. So, keep yourself informed and inform those around you.
- Hand out pamphlets to your doctors, throw a fundraiser for PSC Partners, or inform your doctors about new treatments or alternative therapies you want to try.
Find a Good Doctor
“Be prepared to educate your doctor.”
- There’s a bit of a debate over whether to see a hepatologist or a gastroenterologist. Bottom line: find a doctor who is familiar with PSC, if at all possible. If that’s not possible, be prepared to educate your doctor. Information is paramount.
- Support groups and other PSCers can be invaluable in this regard. Symptoms get shared, new research uncovered, medications discussed, and questions answered.
Check this link for help in finding a physician.
Don’t Isolate Yourself. Find Others Like You!
“Bond through a great support system.”
- For many, the worst part of the diagnosis is the feeling of isolation that comes along with it.
- PSC is a rare disease which leaves us believing that we’ll never meet another PSCer. Not true. Yes, we’re rare. So what? That’s all the more reason for us to bond through a great support system.
- Don’t be afraid to tell people about your disease. Some of us blurt it out in the first ten minutes while some of us wait weeks. It’s a personal judgment call.
Find others online and in person here.
You might start by joining our Facebook group.
“If something doesn’t feel right, do not feel silly asking about it.”
- There’s no doubt about it, some days your PSC symptoms will drive you bonkers, almost literally around the bend and back. The itching and fatigue alone can be enough to make anyone cry for mercy, but there are some things you can do to help your doctors help you.
- Get a notebook and keep it regularly updated. Include the following information: insurance info., name of diseases, medication lists, doctors’ contact info., emergency contact, living will, advanced directives, all your lab and test results, procedure notes, etc. A brochure describing your diseases is another excellent idea to include. You can also download our educational brochures for your caregiver and your medical team. Check them out, Living with PSC, Pediatric PSC and PSCP Patient Registry.
“Keep an updated medication card with you at all times.”
- If possible, use one pharmacy, preferably one with branches that share information in more than one state. That way, when any new medications are prescribed, the pharmacist can check for conflicts.
- Don’t leave refills to the last minute. Some medications for PSCers are not overly common (Urso for one), and may take a day or so to come in at your local pharmacy.
- Keep an updated medication card with you at all times. Type up your medications and dosages, put your insurance ID and doctors’ numbers on it, allergies, emergency contacts, any major medical conditions (like the fact that you have PSC). Shrink it down with a copier and laminate it. Stick it in your wallet or purse, and keep it with you.
Maintain Good Nutrition and Exercise Regularly
“Dehydration is definitely the enemy.”
- Stay hydrated. Dehydration is definitely the enemy.
- Eat healthy foods. Low fat seems to be the top recommendation. Ask your doctor about low or high fiber diets.
- Make sure you’re getting enough potassium, vitamin D, vitamin A, and vitamin K.
- Avoid alcohol or anything else that can stress your liver and has no proven benefit.
- Take your medications!
- Exercise is critical. Even if you can only walk ten minutes a day, squeeze it in.
Read about PSC and nutrition here.
Manage Finances and Insurance
“Unfortunately, having a chronic illness isn’t cheap.”
- If you have insurance, do whatever you can to keep it. It’s important. PSCers have terrible trouble getting insured.
- If you don’t have insurance, look into options: Medicare, private companies, etc. Be vigilant and protect yourself.
- Many PSCers find themselves in need of some assistance as they become too physically tired or too mentally exhausted to work. You can apply for SSDI (PSC is a recognized disease) or SSI. Check out what your state offers and read through what your personal disability insurance covers.
- Unfortunately, having a chronic illness isn’t cheap. Spend your money wisely. Make sure you have enough to cover yourself for not only regular expenses but also for hospitalizations, medications, doctor visits, co-pays, etc.
Prepare for a Transplant
“Chances are you may, indeed, need a transplant, but you probably won’t need it tomorrow.”
- Many of us hear the Big T word (transplant) during our, “Welcome to the World of PSC” initiation, but we don’t get too much information on the actualities.
- Chances are you may, indeed, need a transplant, but you probably won’t need it tomorrow or anytime soon, so you have time to prepare.
- Utilize good nutrition and consistent exercise to keep yourself in good physical condition.
- Find out about the stages of liver disease. Learn about MELDs and FISH. Don’t be shy; plug yourself in!
Click here to learn more about transplant.
Join the PSC Registry
- Help researchers worldwide unlock the mysteries of primary sclerosing cholangitis (PSC) by completing your profile and joining PSC Partners Seeking a Cure in advancing PSC research towards a cure. Your participation is important! Click the link at the bottom of the page to for more information and to add your name and information to the registry.